Almost three months have passed since I last posted here and during that interval I often debated with my inner voice about when and what to write. I drafted some entries that spoke mostly about the medical journey I was on during that time, but I decided to not say anything, to be silent as I recovered. My motto has often been “when in doubt, do nothing” if the circumstances need more clarification or direction. Conversely, I am always dealing with doubt and know it to be a useful catalyst. It seems, still, that the months between August-December 2015 contain a lot of blank spots for me. Someday I will recover that time and write about it in my poetry, for I made recordings for notes since I could not read or write for several months due to side effects that disrupted my eyesight. The other challenge has been to my memory and attention span, both of which were impacted by the high dose chemotherapy as well. I am much better, but still painfully aware of the cognitive changes that I hope are temporary.
There was a significant medical benchmark for me to reach, which I did earlier this month. At 100 days post-ASCT I got the results and analysis of how effective the ASCT was and prognostics for moving forward. The most succinct way to sum it all up is this: The ASCT helped but it did not achieve the hoped-for complete remission. Instead, I relapsed, in the technical sense, and restarted chemotherapy at the end of December. My biggest hope was that there would be a long-term remission allowing me to take a break from all the drugs; maybe that can still occur with the newest regimen, which seems to be working and is not too onerous.
More importantly, I am determined that this new year will be about moving forward into new adventures and creative opportunities, with cancer only a small superscript at the bottom of the pages on which I write my life. Last year was a marked year, overwhelmed by cancer treatment and the endless waiting that is so much a part of every cancer patient’s life. You wait for diagnoses, results, doctor visits, and procedures that are often uncomfortable or painful but mandatory. Staying present is more dependent on navigating fatigue and side effects than it is on being able to remain sanguine about the future, every moment framed by ongoing questions. This year will be different and I want to believe that I will regain my sense of my self as “a woman with wind for her soul,” a soul that could have been crushed by all that has occurred.
The title for this post is a translation of a French phrase applied to a famous French-Belgian woman explorer, Alexandra David-Neel (1868-1969). I haven’t found the source of the quote yet. It came to me as a French inscription on a “used/vintage” wool Hermes scarf I purchased several years ago (2009 was the year of issue, so I don’t really consider it vintage). The scarf depicts David-Neel on her 1924 journey to a Tibetan monastery in Lhasa, which was forbidden territory for outsiders. The French phrase, La femme aux semelles de vent, spoke deeply to my wanderlust and made the scarf talismanic. The first time I wore it was the graduation ceremony when I received my MFA from Mills in May, 2014. I believed, then, that I was going to change the direction of my life to better support my creative work and career options; I still want to believe that, although the health crisis intervened and pretty much forced me to put a lot of dreams on hold until now.
Not speaking French, I alter the phrase slightly to say that I am “a woman with wind for her soul” because I finally remembered something important that was temporarily missing from my life these last few years. Last August, out in the high desert of Nevada, I lay in bed one night beneath an open window just so I could listen to the wind roaring down from the Ruby Mountains, feeling it rustle my then long hair and coolly brushing my skin. It was an ecstatic moment for I had not felt the wind like this in years and I was able, at last, to reclaim a long-buried sense of who I am. It is hard to remember who you are in a health crisis, be it cancer or something else. Part of my healing, now, is to remember who I am, irrespective of a cancer that will be only a footnote to my life, not the main essay.
The nomadic spirit is restless and I am generating the strength and focus to seek new landscapes and mysteries, places and moments of being that will heal me more deeply and surely than all the pills and procedures. I have endured and now must thrive. I carry this phrase with me, on a small folded piece of paper along with other talismans of stone, shell, a photo of my children, and a thin silk handkerchief from a dear friend. I carry the wind in my soul until I find it in the landscapes I explore, hoping to soar on invisible wings, again.